Other Ways to Help: Advocacy (Easy Task, Big Results)

There are twenty-six million U.S. adults who have chronic kidney disease. Millions of others--including children--are at risk. One of the most direct (and, thanks to the Internet, easy) ways to help is through advocacy. Communicating with elected officials is perhaps the broadest, most effective way of helping large numbers of people affected by chronic kidney disease, organ donation, and organ transplantation. Here are just a few examples of important legislation resulting from the efforts of group and individual advocates:

1994 - System for fair allocation of organs established; sale of organs made illegal

2007 - Paired kidney donation/transplantation becomes legal

While there are many issues and policies that still need to be addressed, the following one is vitally important to all transplant recipients:

Anti-rejection drugs are critical to the survival of post-transplant patients; a minimum of 2 must be taken daily for life. The cost of these drugs is staggering. While Medicare covers 80% of this cost, coverage is limited to 3 years only. After that, patients are on their own. They must find some way to obtain an average minimum of $26,000+ of anti-rejection drugs every year for the rest of their lives. The following is a sample list of 2009 costs for a one-monthsupply of 6 commonly prescribed anti-rejection drugs from Amber Pharmacy, a transplant mail-order pharmacy:

Rapamune

$295.35

Cellcept

1020.48

Myfortic

799.6

Neoral

559.35

Prograf

1226.36

Valcyte

2064.2

Average cost: $1,099.22 per drug, per month

x2

drugs, minimum

$2,198.45

per month

x12

months/year

$26,381.36

per year

For those covered by large group health insurance (such as that offered by employers), a significant portion of these costs are covered. However, for those with serious health issues who do not have group coverage (the self-employed and some retirees, for example) private insurance prescription coverage is often minimal.

$26,000+ per year is a heavy burden--far beyond the means of most people and a “double whammy” for those already dealing with serious health issues. Initially, it appeared that the 2010 health-care reform bill was going to lift the 3-year limit when it was approved by the U.S. House of Representatives in November, 2009. However, the provision was not included in the Senate passage of the bill in December, nor in the final bill that was approved in March, 2010.

Four separate bills to address this situation have been introduced in the past. All four of them are are now dead, thanks to no further action on the part of the committees to which they were referred. Public officials pay attention to “squeaky wheels,” and one of the most effective ways to “squeak” is by writing to members of Congress. Please . . . play a pivital role in the life of every transplant patient by advocating for lifetime coverage of anti-rejection drugs. Letters to the editor and other media contacts are also effective in getting the attention of both the public and public officials.

Numerous web sites include similar interactive features that allow you to advocate for issues related to kidney disease, dialysis, donation, and transplantation. They are described in the “Advocacy” section of Online Resources.